NF2 is the presence of slow-growing tumors on the eight cranial nerves, which help people hear and maintain their balance. As the tumors grow they may damage nearby structures, such as other cranial nerves and the brain stem. The tumors may eventually surround the brain, spread into the spinal cord and onto the skin.

“By 2009, I’d started experiencing hearing loss in one ear,” Monusko said. “I went to the doctor a number of times, and he would send me home with ear drops.”

Over the following months her difficulty with balance, dizziness and hearing loss progressed.

“One day I was laying on the couch on my good ear to listen to music, and I realized I couldn’t hear anything,” she said. “I referred myself to an ear, nose and throat specialist. I asked him what a 33-year-old could do about hearing loss. He said, ‘You’ll deal with it like everybody else with hearing loss does.’ The doctors treated me like I was a hypochondriac.”

A month later she went back to the same doctor. This time he ordered a brain scan.

“He called me a week later,” she said. “He said, ‘What’s going on is beyond my expertise.’ He sent me to St. John Providence (hospital) in Novi.”

At the hospital’s neuroscience center, Monusko was diagnosed with NF2. She had two tumors on her brain. Surgery was scheduled for Dec. 18, 2009, to remove one of them. The goal was to get her home by Christmas.

She didn’t make it home for Christmas. A brain stroke on Dec. 29 put her in the hospital’s intensive care unit for one month. Afterwards, she was sent to a rehabilitation center in Petoskey for another month, then continued rehabilitation at home over the next year.

“I needed to heal enough to be safe around my children because my husband is gone so much with his work,” Monusko said. “I couldn’t walk, bathe, cook, and I had to learn everything over again. The state took away my driver’s license due to the stroke.”

Throughout her ordeal she’s had the support of a loving husband, friends and neighbors. She worries about her two daughters, Shelby, 15, and Brooke, 8. About 50 percent of affected people have inherited a gene for the disorder. The other half was afflicted by a spontaneous genetic mutation that can be passed on to children. Her daughters will have to be tested throughout their lives.

Before her disorder began disabling her, Monusko loved the outdoors and worked as a landscaper for many years. She then worked for two years at a hospital and was taking classes to become a nurse.

She is aware that there is another tumor on her brain which will someday require surgery. There is a spot on her spine and a couple on her skin that her doctor is keeping his eye on. Most likely she will eventually go fully deaf.

Although her priorities have changed as far as the activities she once loved, Monusko refuses to sit back and wait for her health to worsen. She is doing well now and has her driver’s license back. She cares for her family and does volunteer work four days a week in the community. Her biggest priorities now are to advocate for funds to research NF2 and to encourage people to become their own health advocates.

“If I can’t make a difference with the disorder in my lifetime, I’m going to try to make a difference for my children or grandchildren,” she said. “And I want people to know that if they’re unhappy with a doctor’s answers, to not take no for an answer. Keep pushing.”

To learn more about NF Type 2 and the other two types of NF, visit www.ninds.nih.gov or call Monusko at 732-5566. To donate to NF research, write a check to NF, Inc. and mail to Monusko, 4955 S. Vail Lane, Gaylord, MI 49735.